Bridie’s story.
Stroke at 17.
26th December, 2010
It came out of the blue with a build up to detonation, one December morning in the Christmas upheaval. I was 17, studying a Childcare and Education Diploma at college whilst working my first temporary weekend seasonal job in retail and just getting over a pesky cold. That was why when I woke up with a headache too unfathomable to place on a pain scale, I thought nothing of it.
What followed was vomiting, drowsiness and a sense of ‘offness’ — like I wasn’t partaking in the existence passing me by. There was a funny numb feeling in my left leg a week before this as I went to my doctor with suspected flu but a mention of it was met with an unserious scoff “do you think you’re having a stroke?”. To be fair, I was equally as ill-informed because something as serious as a stroke never crosses your mind as a teenager. It was just the latter end of a viral infection. Nothing to worry about, right? I couldn’t be more wrong.
After 2 days of no improvement, my Mum called an emergency doctor out on Christmas Eve, and he did everything right on paper. Neurological tests were fine, no obvious signs of stroke (no mention of it at all actually), diagnosed with a migraine and off he went; him and I both being unaware I’d just not reached my pinnacle yet. I’m not quite sure how I made it through the Christmas period but I did on autopilot; between intermittent consciousness and dosing up on painkillers to quash the agony crucifying the back of my skull. It wasn’t until the 27th December that it really escalated. My Mum and Grandma had gone to take a sick note to my workplace and arrived home to find me screaming on the landing. I’d taken a turn whilst trying to take my mind off how poorly I felt; I was watching a film when suddenly I felt very dizzy and off balance, my vision was blurred and my left side didn’t feel like it belonged to me. I’d tried to walk from my bedroom to the landing only to collapse in a heap as my legs wouldn’t carry me. Having suffered from panic attacks for a few years, it felt like I was entering the dissociation part; only so much more intense. There was no messing around after this and 999 was immediately dialled.
Luckily, given it was 2010 and the ambulance service being in a better place than it is right now, the paramedics arrived within minutes. I had to be assisted down the stairs and outside as I’d lost all balance and everything was spinning. It was a strange feeling because obviously I was visibly terrified but I was so lethargic I developed a sense of nonchalance; almost like my brain was shutting down. The calmness of the situation is all I remember as it’s all a bit of a blur. Whilst everyone around me tried to disclose their panic and confusion I was weirdly chilled, remaining dozed and oblivious with my eyes screwed shut like I’d faded from reality entirely.
The main thing was that a stroke was still not suspected whatsoever and thinking back I realise how wrong this was; that I’d reached a point of displaying more detectable signs still without proper facilitation. It’s even more frustrating knowing nothing’s changed no matter how much those of us with non-typical stroke symptoms advocate for further messaging. There wasn’t any Facial drop, no slouched Arm, zero Speech interference, and yet I still needed that Time. I’ll never know whether having medical intervention sooner than the week to 10 days of having reduced blood flow to the brain would have prevented my infarction and concurrent chronic pain syndrome but I try and not dwell on that too much. It’s why I’m kind of glad I don’t have any photos from when I was in the hospital or post-stroke recovery, as I’d rather look to what’s ahead, not what was (and also it was 2010, on the spot phone pics weren’t a thing back then!)
Back to the past… whilst I was in the ambulance I had some oxygen, observation checks and an ECG. Nothing was a cause for concern so they sent me straight to Resus as they didn’t know what was wrong with me, though the first predictions were something heart related. I had further tests in the Resus unit and my blood clotting levels were all over the shop so they knew there was a clot somewhere. By this point I was completely oblivious. I briefly remember drifting in and out of sleep, my mum bringing me some food, and going for my scans but the in between bits are foggy. I had an X-Ray of my chest to check for any blood clots on my lungs and that was all clear. They then sent me for a CT scan and that’s when the large clot in my Thalamus was discovered. There was also swelling behind my eye — Papilledema. I had no response in me when I heard the news but I still managed to ask my very distraught family if I was going to die.
The doctors started me on the antithrombotic drug — a Tinzaparin injection — right away, along with promptly stopping my contraceptive pill, and I was moved to a clinical decision overnight. To be honest, the treatment was subpar. I think because I had no physical signs of stroke and I was extremely young, the staff presumed I was okay to manage on my own. Not only were they not going to let my Mum and Grandma visit without leaving my young teenage brother behind (2 person to a bed policy), they left me to walk to the toilet alone. It was only around the corner and yet in my mind it appeared to be a maze. All my coordination had gone out of the window and I’m unsure how I made it back to the right bed. It was like I was living in an apocalyptic dream.
The next day I was moved to a neurology ward where I was bookended amongst the elderly. Being 17 I was caught in the middle of being a year too old for the children’s department and 50 years too young to be made comfortable and at peace surrounded by audibly confused geriatrics. I slept most of the time, or if not I relaxed with just my right eye open as I couldn’t see much out of the left, so it didn’t bother me too much; but eventually I was moved to my own side room due to both my age and my anxieties.
Before this, I had enough blood drawn to feed vampires for an entire year and then an extra present as my period arrived from stopping the pill. There were some slips in standard of care once again because I had to be the one to tell the nurses the blood isn’t coming from anywhere but my uterus, and then they lost several tubes of the blood they’d already taken so I was bled dry a second time. I guess sometimes it pays off to be blissfully unaware due to a lack of brain function!
I was scheduled for an MRI the next morning and that’s when reality hit. It was the first time I’d really tuned in to what was happening and I was petrified, visibly crying and shaking with fear and concern even though I didn’t really understand the situation properly. The official diagnosis came back as a Cerebral Venous Sinus Thrombosis which was 99.9% certain caused by the pill. All other possible complications or disorders were ruled out with tests so that was the most plausible cause of stroke.
I was in hospital for just 1 week with a brief overnight respite at home kindly approved by the doctors on New Year’s Eve (where I absolutely devoured my first proper meal). A few days later I was discharged after an in depth consultation with who would become my go-to neurologist and stroke physician through the years; him explaining honestly what happened to me, my prognosis and my aftercare — though I don’t think I really absorbed it until my outpatients appointments. Everyone on the ward — including the top neurology clinicians — were surprised at how fast I had “recovered” and although I had a long way to go, were hopeful I would be back on my feet quicker than they originally thought and that the feeling in my left side would return.
The optimism was mutual. I thought I was relatively lucky with recovery. I’d not had the stereotypical ischemic stroke; I could still talk and move — with a little hand-holding assistance in the first few months — my mouth wasn’t drooped, and there wasn’t any physically visible impairment at all really. I had gained this new lease of life and formed a freshened outlook, but I still felt scared and lost and hopeless. I’d lost my general independence and sense of direction; I was back to being nurtured and now I had to take it one day at a time. Unfortunately, that became countlessly more complex.
Escaping the burden of stroke wasn’t the case and I found that out with brutal force in around April 2011 — 4 months after my stroke. I began experiencing burning, tingling, sensory sensitivity and zaps of what felt like electricity from head to toe on my left side but more prominent in my hand, arm and foot. In a way, this mimicked original stroke symptoms so of course that sent me spiralling. I ended up in A&E not long after as a precautionary but it was just severe anxiety around this newfound foreign feeling. Anxiety wasn’t an unknown concept to me after suffering from it since I was 13 years old but this was trauma based. I’ve never been diagnosed with CPTSD but I know now this is probably what I was experiencing – and still do, especially around my strokeversary and if I have a headache/feel dizzy, or if my left side feels more numb than usual.
As well as the return of my anxiety and depersonalisation disorder, permanent fatigue and some slight vision disturbances in my lower quadrant, I had to adjust to my agonising chronic pain and loss of sensation. After describing my symptoms to my then neurologist it was confirmed I was suffering from central post-stroke pain, also known as thalamic pain syndrome or Central Pain Syndrome, and it’s been an ongoing battle ever since; both physically and mentally.
My understanding of the condition was poor, I thought it would be a temporary curveball so it took me many years to perceive the significance and come to terms with the fact it is a lifetime commitment. In perspective, I had no choice but to accept and adapt to who I was now. It was either that or sit and mourn for the rest of my days and I still had so much to give so the decision was a no-brainer (pardon the pun).
The pain is caused by a damage in the sensory pathways of the brain — which in my case is the scarring from the blood clot — and it isn’t the pain you’d typically think of. It manifests with muscle spasms, sharp nerve pain, stiffness, twitching and primarily, a lacerating burning pain — as though my skin is being torn apart; like a ‘Chinese Burn’ but multiplied by ten. At its worst, I can’t use the affected limbs; burning in my hand/arms means I can’t do much for myself because I’m left handed and also you don’t realise just how much you rely on your hands, and burning in my legs/feet means I remain stationary until it subsides which could be anything from a few minutes, to 24 hours, to a week. Waking up every morning is like a Russian Roulette; will it be tolerable enough to get on with my day or will it be debilitating enough for me to be completely inactive?! The only thing that’s certain is that it’s very hard to treat. It’s central to the nervous system so can’t be treated with bogstandard medicines and is often described as “intractable”.
I didn’t require rehabilitation after my stroke. In my case it was just a trial and error of pain management. I have tried various methods, mostly with failure. From pointless appointments with the pain clinic, to acupuncture and a conversation on Deep Brain Stimulation with my amazing neurologist (who retired 4 years ago but who I wouldn’t be so headstrong without). Ultimately, we decided invasive surgery wasn't a risk I wanted to take being so young so the only option was medications with a side of lifestyle switches.
I’ve also tried several of those. Pregabalin, which didn’t agree with me at all. Tegretol, which didn’t show any improvement and the last resort, Lamotrigine. That's been the most effective so far. It stabilises the pain to the point I can function at the baseline of "normal" (that being if I never did anything which requires a lot of energy again in my life) and I've been on that since August 2020. I take 50mg in the morning and evening along with a low dose 40mg of Nortriptyline which I've been taking for over 10 years now.
It does severely affect my daily activity — often to the point that I’m bedridden (or sofa-ridden) — meaning I’ve not been able to do the things everyone else my age has been doing. I’ve never held down a “proper” job, learned to drive, moved out of my family home, fallen in love, got married or started a family. I haven’t felt comfortable enough to share the “broken” part of me, and I’ve struggled with both anxiety and depression subsequently. Despite a multitude of hospital appointments and a body rattling with pills, my pain does still carry the leverage and on top of that, so does the invisibility of my illness. One of the toughest parts about Central Pain, is that it can’t be seen from the outside so people assume I’m completely fine and most of the time I just don’t have the energy to correct them.
It’s also hard to plan ahead with Central Pain Syndrome. Anything from stress or upset, to lack of sleep, to thinking too hard, to cold weather, to typing, to even taking a shower can add fuel to the flames. Sometimes, even doing nothing. As much as I try to take control — scheduling rest time pre-event, ensuring I’m aware of my limits, prioritising my health etc — my brain does as it pleases. There’s no warning when it’s about to attack, it’s either out of the blue or a looming presence. Exercise or any form of everyday physical activity that you’d usually take for granted aggravates my pain levels. I can’t sense touch or temperature and yet those very things can trigger a flare. It’s guaranteed I will have a huge flare up of both pain and fatigue if I’ve been busy and on my feet for a long time; I’ve grown to accept I will suffer from having fun, but life’s too short not to do it anyway!
I have no choice but to suffer greatly on my bad days, but I still try to look at the positives — that I made it, that I have a steadfast support network, that I still have so much time to soldier on as a survivor without the victim card. If I don’t crack on with managing the best I can then I would be perpetually horizontal yelling out in distress, asking the universe “why me ?” so I move forward, aiming to reach the silver lining I want to bring to The Stroke Sisterhood table.
This is the approach I have taken in those 14 years; with a rollercoaster of blips, soaring highs and crippling lows, but some strengths to take away from it too. I finished my college course from home and smashed it with an A* grade. I began holding the fort on my mental health by developing coping mechanisms through counselling and neuropsychology therapy. I volunteered, starting with childcare settings and moving on to stroke-based environments. I began blogging and reached a point where I gained confidence to open up and be honest — writing from the heart and connecting with other people by using my own story and experience as a foundation to my creative work and a talking point tool to change attitudes, raise awareness, help, inspire and empower others. I’ve fundraised. I’ve spoken to the press. I’ve taken myself out of my comfort zone and persisted. I’ve partaken in campaigns and most importantly, built a concrete tower of strength and resilience I never knew I had.
At times, there’s doom clouding my every move and I grieve for my former self; the linear growth of how a young adult self-explores their way to the top. I was still finding my feet in life; then the worst happened — and it was regression back to baby steps. But looking back I’m not sad, that stroke struck me so suddenly. My stroke has shaped me into who I am. It’s taken me down avenues I wouldn’t have thought twice about crossing and it’s allowed me to independently tune so deeply into myself that my own company is my favourite kind.
Hardship may have halted my growth and prevented me from having a normal livelihood (whatever “normal” may be) but it’s also led to the pathway of potential and refinement. Despite my chronic condition being all-consuming, incurable and defeating at times, I still don’t wish I’d never not had a stroke. It’s taught me valuable lessons and allowed me to mature into a tolerant and tenacious person; driven by empathy and altruism, determination and wisdom, gratefulness and adventure; thankful to be alive and awarded a second chance. By all means, it isn’t nice having to constantly relive your trauma but without what I’ve had to go and grow through then I’d still be my ordinary old self and I know full well the current me wouldn’t be a fan of that.
Although the after effects of my stroke do determine my capabilities, I try not to make it my entire identity. Life is opposite to what I imagined it to be but I’m also at a place I never imagined to be when I thought it was the end. None of all the wonderful memories made, the connections obtained, the opportunities given, the time and resources shared, the community created, would have occurred without such a massive change in my life — because that’s simply what it is; life-changing, not life-ending!